Illness that blinds, saps hearing bravely battled by child from Michigan
NBC Nightly News correspondent Peter Alexander was sitting at the Diuble family kitchen table in Manchester a couple months ago watching 11-year-old Lilly’s eyes “dart around to see me and her ears strain to catch the conversation around her.”
“I felt like I was at home,” Alexander wrote recently in the NBC newsletter.
Lilly has Usher’s syndrome — an extremely rare disorder that slowly robs its victims of their vision and their hearing.
Doctors say there is no treatment or cure.
Alexander’s sister, Rebecca (Becky) Alexander, also has Usher’s. Doctors predicted Becky would be blind and deaf by the age of the 30. But at 35, with the help of a cochlear implant and the use of a cane, Becky is defying her disability every step of the way.
Though age separates Lilly and Becky, they’ve become friends via email, where they share the same struggles; miss the same things. Like not being able to whisper.
“It would be nice to have a conversation without the whole world hearing it,” Lilly explains.
For Lilly to have a mentor means the world to her parents, Angela and Scott Diuble.
“As a mom what you worry about is, how will your child be able independent?” says Angela Diuble. “To see someone like Becky, who is successful and has a career, makes me think, OK, there’s hope.”
Lilly and Becky plan to meet in New York soon to coincide with an NBC story to air in September on the publication of Becky’s memoir “Not Fade Away.”
Lilly has been featured on Nightly News twice: first, in June when Lilly had raised a whopping $100,000 for the Foundation Fighting Blindness. She was also awarded the 2014 Prudential Spirit of the Community Awards.
Last week, Lilly was again featured on the “Making a Difference” segment. A Nightly viewer heard about Lilly parents’ mission to fulfill their daughter’s bucket list before she loses her sight completely. While the family had already checked off the Grand Canyon, Washington, D.C., and Disney World, the generous viewer arranged for Lilly and her family to see the Golden Gate Bridge in San Francisco.
“I feel like the happiest person in the world,” Lilly said in video clip. Her mom concurred: “It’s incredibly overwhelming when people you don’t even know want to make the best things happen for your kid.”
Back home and now entering the seventh grade at Manchester Middle School, Lilly faces obstacles with her trademark optimism. She’s had to adjust to a different kind of combination lock for her locker, digital books instead of print, and special glasses when she plays soccer. Lilly takes it all in stride.
“We call them our Plan Bs,” she says, adding with a laugh: “We have many of them.”
Lilly’s path toward diagnosis was incremental and painful. As a newborn, Lilly exhibited hearing loss. At six months old, she was outfitted with hearing aids. By the time she entered kindergarten, she’d been patching her right eye to treat what they thought was “a lazy eye” for close to two years.
As a physician’s assistant, research came naturally to Angela. One day she said to the doctor: “Do you think it could be Usher’s?”
The confirmation was “devastating,” Angela said. But she soon channeled her energy toward raising money for research.
As for Lilly, she refuses to be babied or treated with kid gloves.
A few years back, Lilly asked her mother: “What does it mean to be blind?”
Angela answered: “It means a person can’t see, but there are certain gradations.”
When Lilly responded: “Is that going to happen to me?”
Her mother didn’t skip a beat. “Not if I can help it.”
Lilly promptly went back to the task at hand: compiling places to see on her bucket list. Recent additions include the leaning tower of Pisa and the Eiffel Tower in Paris.
When asked how she feels about a future in which she may be both blind and deaf, Lilly is blunt, matter-of-fact and absolutely enchanting.
“Well,” she pauses for effect. “I think I just have to kick some butt in the meantime.”